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Long-term functional outcomes and quality of life in adult survivors of childhood extremity sarcomas: a report from the St. Jude Lifetime Cohort Study

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Abstract

Purpose

This study compared measured physical performance, health-related quality of life (HRQOL), and social role attainment between extremity sarcoma survivors and controls, and evaluated associations between disease and treatment exposures, health conditions, and performance measures.

Methods

Survivors of extremity sarcoma from the St. Jude Lifetime cohort and controls frequency matched by age-, sex-, and race completed physical performance testing and questionnaires. Survivors with Z-scores on outcome measures ≤ −2.0 SD (compared to controls) were categorized with severe impairment/limitation.

Results

Among 206 survivors (52.4 % male median age 36 years (range 19–65)), 37 % had low relative lean mass, 9.7 % had an ejection fraction <50 %, 51.5 % had diffusion capacity for carbon monoxide <75 %, 27.7 % had sensory and 25.2 % motor neuropathy, and 78.2 % had musculoskeletal complications. Severe impairments/limitations were present among ≥25 % of survivors on fitness, balance, and physical HRQOL measures, and among ≥15 % on strength and activity of daily living measures. Lower extremity tumor location (OR 8.23, 95 % CI 2.54–26.67, P value 0.0004) and amputation (OR 8.07, 95 % CI 3.06–21.27, P value <0.0001) were associated with poor fitness. Poor fitness was associated with increased odds of scoring <40 on the SF-36 physical component summary (OR 4.83, 95 % CI 1.95–11.99, P value 0.001) and role-physical subscale (OR 3.34, 95 % CI 1.33–8.43, P value 0.01). Survivors and controls had similar rates of marriage, independent living, employment, and college attendance.

Conclusions

Extremity sarcoma survivors experience high rates of physical impairment and report lower than expected physical HRQOL. However, they are as likely as peers to be married, live independently, be employed, and attend college.

Implications for Cancer Survivors

Follow-up for extremity sarcoma survivors should include assessment of need for further orthopedic care and rehabilitation to address cardiopulmonary and musculoskeletal health.

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Author information

Authors and Affiliations

  1. Department of Surgery, St. Jude Children’s Research Hospital, 226 Danny Thomas Place, MS133, Memphis, TN, 38105, USA

    Israel Fernandez-Pineda, M. D. Neel, B. N. Rao & A. M. Davidoff

  2. Department of Oncology, St. Jude Children’s Research Hospital, 226 Danny Thomas Place, MS133, Memphis, TN, 38105, USA

    M. M. Hudson, A. S. Pappo, M. W. Bishop & D. A. Mulrooney

  3. Department of Psychology, St. Jude Children’s Research Hospital, 226 Danny Thomas Place, MS133, Memphis, TN, 38105, USA

    J. L. Klosky

  4. Department of Epidemiology and Cancer Control, St. Jude Children’s Research Hospital, 226 Danny Thomas Place, MS133, Memphis, TN, 38105, USA

    T. M. Brinkman, K. R. Krull, L. L. Robison & K. K. Ness

  5. Department of Biostatistics, St. Jude Children’s Research Hospital, 226 Danny Thomas Place, MS133, Memphis, TN, 38105, USA

    D. K. Srivastava

Authors
  1. Israel Fernandez-Pineda
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  2. M. M. Hudson
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  7. D. K. Srivastava
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  8. M. D. Neel
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  12. D. A. Mulrooney
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  13. L. L. Robison
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  14. K. K. Ness
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Corresponding author

Correspondence to Israel Fernandez-Pineda.

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The authors declare that they have no conflicts of interest.

Funding

This study was funded by Grant CA 21765 from the National Cancer Institute and ALSAC.

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No animals were involved.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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Informed consent was obtained from all individual participants included in the study.

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Fernandez-Pineda, I., Hudson, M.M., Pappo, A.S. et al. Long-term functional outcomes and quality of life in adult survivors of childhood extremity sarcomas: a report from the St. Jude Lifetime Cohort Study. J Cancer Surviv 11, 1–12 (2017). https://doi.org/10.1007/s11764-016-0556-1

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  • DOI: https://doi.org/10.1007/s11764-016-0556-1

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